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Is Chemo necessary?

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Taharadale View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Taharadale Quote  Post ReplyReply Direct Link To This Post Posted: Mar 09 2010 at 12:07pm
I am sitting here in the middle of the night because I can't sleep for thinking! I met with the oncologist yesterday she offered me 4 cycles of chemotherapy - EC, followed by radiotherapy - and outlined the reasons for that. She said there is a 5 to 8 percent chance that the cancer has spread ( I say that's a 92-95 % chance that I am cancer free!) 
I still don't know - my family are all  very supportive whichever way I go and have all said they think I should take the chemo option. But I still don't know - I have always been such a healthy person, I exercise, eat fairly well - I rarely even have a cold! My cancer was small (12mm) - sentinal nodes clear. Stage 1 Grade 3.
Has anyone investigated alternate therapies or decided to go down that track?
I have many people supporting me and my church praying for me as I process this decision. I know God is with me in this and that he wants me to trust Him. I just don't have clear direction.
I don't know I don't know I don't know!!
Confused
 
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Carol (Tenn) View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Mar 09 2010 at 12:30pm
TaharadaleHug,
I've given you my opinion...I'm not a doctor....It's just my own experience....Like someone already said, chemo is doable. But in the end you have to decide for yourself. This may not help.....but what if you choose no chemo and you have a recurrence (which tn does very often) then you'll wish you had....if you don't have it and it doesn't recurr then you made the right choice. The complexity of all this in no one knows for sure. For me, better safe than sorry. I know this doesn't help a bit.
I will pray for you that you make the decision that suits you the best.
Love and Prayers,
Carol
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Taharadale View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Taharadale Quote  Post ReplyReply Direct Link To This Post Posted: Mar 09 2010 at 12:37pm
Thanks Carol
I appreciate your opinion!
Barb
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Post Options Post Options   Thanks (0) Thanks(0)   Quote diane1234 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 09 2010 at 12:59pm
Hey sweetie....sorry u had to join, but I can promise u this.....LOTS OF LOVING LADIES and MEN on here. I am 36 and u can see my signature below. I met women during chemo that was stage I and yes they did do chemo. Of course it is an individual choice. I have also met women doing chemo who knew their tumors did not have hormone receptors. They were triple negative and did not know anything about it......I believe knowledge is POWER.......

If I was in your situation I would do it. Again individual purpose. I had my surgery first. I was given the option of lumpectomy and immediately said oh NO I want that left one OFF...(cancer was in left breast) Surgeon said ok HON......

Couple of days later I called her and said OK....I want em BOTH gone....she said honey that is a HUGE decision on your part being 36 years old. I said well my gut just tells me to....I am SURE it was the Lord. 

She then said As a surgeon I am suppose to give you the option of lumpectomy or mastectomy, but with YOU choosing a double, I must say GOOD GIRL!!!!!! That was when she thought we were dealing with a 2.5 to 3.0 cm tumor with NO NODAL involvement....Had that surgery 3 weeks later and ended up being 4.7 with 3 positive nodes.....I was in shock.

Before surgery I had a consultation with a Plastic Surgeon about reconstruction....I said this lump is driving me crazy. I HATE waiting 2 more weeks. What if it growing....Which I could tell it was. He stated.....They have studied this stuff long enough.... They KNOW how they grow......

With that being said.....UM I must SAY WRONG!!!!!! They DID NOT KNOW and still DONT......That is why my Oncologist reassures me (I can tell U one thing....the greatest minds in medicine are working on YOUR kind all over the world right now)

My point to my post was to tell u to go with your gut. I did and have NO regrets about loosing boobs. I NEVER went to Doctor Before...NEVER......I was always healthy and well. If hubby or kids got a sniffle I was on that phone getting them into see a doctor. 

That lump showed up and I must say OUT OF NOWHERE on a Saturday.....That Monday morning I WAS ON THAT PHONE with my obgyn.....That was 4/13/2009...told me first available appt. was May 8th.....I said ummmm NO I need in QUICKLY.....I was just there 2.5 months ago for my yearly and she did not feel ANYTHING during her self breast exam....NO MAMMO yet as I was 36 and NOT considered High risk...u know NO FAMILY HISTORY....had kids young....NURSED....yadayada!!!!!!!

We know our bodies and we know what our instincts are telling us....LISTEN to it and MAY GOD BE WITH YOU.....I AM AGAIN SORRY U HAD TO JOIN.....wish I could wrap my arms around you.....instead I will send loves through the internet......

LOTS OF LOVE
dx 4/09 at 36 yrs old. dbl Mast. 5/09. 12 weekly Taxol 4 FAC tri weekly. 32 rads completed 2/2010. Its Back 5/2010!! Chest wall, Mediastinal node, Lft mammary node and liver. Back on chemo.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Mar 09 2010 at 3:24pm
Taharadale,

12mm=1.2cm = a decent sized stage I (not tiny, like the women talking about 3mm).  The 5-8% he gave you is on the low side for TN.  I'd put it at more like 15%.   I think you should do the chemo.  Also, you might consider doing TC instead of EC, which is easier and supposedly more effective.  T=taxol, C=cytoxan.

Good luck deciding!

Love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LRM216 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 10 2010 at 2:09pm
Please make sure your oncologist is learned and very familar with triple negative cancers - that is so very important.
 
I was 62 at diagnose (one year ago Feb. 23) and extremely shocked.  Have had mammos since I was 40 every year and never even 1 call back -then this!  I was shocked beyond compare as I too come from a family with no cancer whatsoever on either side - I am the first.
 
I also was stage 1, Grade 3, 1.2 cm IDC right breast (11:00 and 5cms. from nipple), no nodes, no vascular seen.  With my onc's persuasion, and my desire to live, we went as agressive as we could, since I am also a widow, work full time and raise my 14 yr. old grand-daughter.  I wanted to hit it with everything possible at the time so I never had to say - if only.....  While what I did I can only pray will have killed this beast, of course, there is always the chance that I might not be one of the lucky ones.  I choose to think otherwise.
 
Wish you all the best on your journey.  We are here for you every step of the way.
 
Linda
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Mar 10 2010 at 11:57pm

I agree with LRM216 - you really need to understand that grade 3 triple negative aspect of your cancer.  Most of us here were young to younger, healthy and happy before our diagnosis.  As my doc said - "you are 100% healthy - except for that really agressive breast tumor they just removed from your breast!  You are young, you are healthy - take the best most aggressive treatment you can.  I've never had a patient come back in and say "'gee, I wish I had done less chemo"  but I've had way too many wish they had taken the chemo!"    This is a sneaky disease, if you do nothing,  - and if you don't do chemo there's not much else to do, will you worry excessively?  Will you be more stressed than you would have been with treatment? 

IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote outnumbered Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2010 at 12:09am
I said this before, and I will repeat it...I wish I had chemo and I think I do worry more than I would have otherwise. 
 
The standard for er/pr+ is if it is 1cm you get chemo.  Less than that, no chemo.  When it is TNBC all bets are off and they offer it almost always.  Unfortunately my first onc was not TN savvy.  By the time I got to the right onc, the window of time had closed for me. 
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2010 at 9:26am
Good morning....I have two words for you......BE AGGRESSIVE!!!Thumbs Up
Listen to Sara...I guess that's more than two words.....but they are sincere!
Love and Prayers,
Carol
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2010 at 9:31am
Hey Sara - don't you pass that critical 2 year mark this summer?  Once we get past the 2 year mark our odds drop dramatically - CONGRATS!  When I get to 2 years I start seeing my medical oncologist every 6 months instead of every 3 - WOOT!  Thumbs Up
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote outnumbered Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2010 at 9:36am
Hey Kelly,
Thanks for the cheers. 
Yes, I am at the every six month visit point.  I saw my onc last month and I am good for 6 month now...
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mary58 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2010 at 10:01am
I hear you - I think we want to do the RIGHT thing!  That time of indecision is very difficult.  I think you do need to listen to yourself, God, and gather information.  It seems like there is no person just telling you what to do, that is what I think I was looking for.  I am borderline everything, size, age, etc.  .5 cm, 58 years old.  I finally decided to go with radiation.  I don't know if this was the right choice - but imagine I will down the road.  After radiation I am going to continue what I call my chemotherapy - (what I can do) by staying on the low fat diet and daily exercise.  I know that God has a plan for me - sometimes we get overloaded with so much information we don't know which way to turn.  I wish you the best and know that you aren't on this journey alone.    Mary
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Taharadale Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2010 at 5:56pm
I just want to thank everyone for their input and support - this really is a wonderful forum.
I did decide to take the chemo path - EC  and have had my first cycle a week ago.  The decision just became really clear to me as I prayed and shared time with the Lord.  So far not too bad. Nausea has been well controlled and generally I feel okay.  I have made an appt with a wigmaker and am having my hair cut short on Friday.  I was away at a women's conference in Sydney before going in to start chemo and the girls I was with all bought a scarf which they are going to wear when we get together at church as support - not only for me but for others who are going through their own battle with cancer.
Barb 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LRM216 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2010 at 6:28pm
I am glad you chose the way you did.  All of us question it, and God knows, I dreaded it so much, but I went as agressive as I could.  Will it allow me to live longer and not die of cancer, I can only hope, but at least, when all is said and done, and all of your treatment is behind you (and that will happen, I promise!), at least you won't spend the rest of your life asking "woulda, coulda, shoulda".  Best of luck to you - hope your chemo journey is a relatively easy one.
 
Linda
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cherylt Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2010 at 10:49pm
I am a stage 1a and had a very tiny tumor and had radiation. Even the top docs that I found said no to the chemo.  I know these are scary decisions.  I pray that i made the right one!  Good luck to you!Smile
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Carol (Tenn) Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2010 at 1:05pm
Cheryl,
 
How small was you tumor?
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 29 2010 at 7:02pm
Pam, Thanks for finding this article.

Even Tiny Breast Tumors May Need Aggressive Treatment


http://www.drugs.com/news/even-tiny-breast-tumors-may-need-aggressive-10364.html
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote outnumbered Quote  Post ReplyReply Direct Link To This Post Posted: Mar 29 2010 at 7:11pm
Articles like this make me sick to my stomach.  I know I cannot turn back the clock, but it really worries me.  Especially today when I went to my orthopaedist to confim that my neck pain is just a run of the mill pain in the neck.  The x-ray did not show anything, and he said my symptoms are consistant wih a cartiledge irritation which should resolve on its own in a few weeks.  Without a MRI he cannot completely rule out mets.  I have decided to wait it out.  He is sending a note to my oncologist though. 
Sorry, did not mean to hijack the thread, but see what anxiety you go thru when you don't get the chemo?
~Sara

DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG

BMX (nipple-areola-sparing) 8/5/08

Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09

BSO 9/3/09

NED since 08/05/2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Mar 29 2010 at 11:23pm
paranoia is easy to set in when dealing with cancer. When I found this site and read how much chemo everyone was getting, I became worried. It had been 6 years since chemo ! I really had to reign in the logic to keep my mind from wandering.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Mar 29 2010 at 11:34pm
Sara,

I didn't mean to cause you any undue anxiety.  I think we all worry that we made the right decisions.  There are things I know now that I wish I would have known at dx and tx.   I wonder if the anxiety will ever truly go away.  I think people like Kirby and Rena are great to give us hope that many do survive tnbc.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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